Being diagnosed with coeliac disease can come as a relief if you’re sick and tired of feeling sick and tired all the time. At the other end of the spectrum it can be a shock for people who don’t suffer with symptoms and feel perfectly well. Either way there’s quite a steep learning curve and old habits can be hard to break.
It can also be a big adjustment for the other people in your family and other parts of your life. You may feel that it’s all about you, but for people who love you it can be quite traumatic, so try to be mindful of that. It’s important too that blood relatives know that they’re in a high risk group for developing coeliac disease too. Especially if they’re suffering any symptoms they should be tested before starting a gluten free diet. You can find a letter about family screening on the left hand-side of the screen when you follow this link.
It is a large learning curve for you and for others in your life, which can seem overwhelming at first. The good news is that there is lots of support out there for you and your loved ones.
The other good news is that you have been diagnosed! This puts you a very strong position to move forward and learn how to be well gluten free and still enjoy a delicious range of foods.
It’s almost fourteen years now since I was diagnosed with coeliac disease, without symptoms, on top of my type 1 diabetes. It was that diagnosis that inspired me to go to university and study to be an Accredited Practising Dietitian (APD). For the last two years I’ve been working with the Australian charity Diabetes Counselling Online, where they provide fabulous support for people with diabetes. I love the work they do for people with diabetes, providing evidence-based and practical advice. It was this work that made me appreciate that people with coeliac disease, as well as others on a gluten free diet for other reasons, also need this type of support as diagnosis does have a massive impact on your life. I’m not trained as a counsellor or social worker, but I do try to understand the pressures people have to deal with in life with a diagnosis of coeliac disease on top of life itself.
Here are three tips that will be a great starting point when you’re first diagnosed:
Tip 1: Join Coeliac Australia – This organisation is a tremendous advantage when you’re diagnosed with coeliac disease. The website itself has lots of helpful information. I find the quarterly magazines they send to be important on so many levels. You get to hear stories about other members, read about the latest research and issues relating to coeliac disease, learn about travel destinations and how to best enjoy them gluten free, as well as many recipes, cooking tips, eating out tips and so much more.
Tip 2: Find an Accredited Practising Dietitian with coeliac disease listed as an ‘area of practice’. – You can read more about dietitians here.
Accredited Practising Dietitians (APDs) have the qualifications and skills to provide expert nutrition and dietary advice. APDs are university-qualified professionals that undertake ongoing training and education programs to ensure that they are your most up-to-date and credible source of nutrition information, in line with DAA Professional Standards.
As coeliac disease is a chronic medical condition, your GP can refer you with a Medicare Enhanced Primary Care Plan to see a dietitian. This gives you $52.95 per visit to a dietitian, for up to five visits per calendar year. You can also choose to use private health insurance or just pay privately if you’d prefer to meet with a dietitian online, such as those listed in the files section of our closed Facebook group Be Well Gluten Free who have expressed their special interest in helping those on a gluten free diet. An APD can help you to implement the strict gluten free diet by teaching about what you can and can’t eat, how to decide if a food is suitable, learning to label read and ensuring your diet is nutritionally balanced at the same time.
Tip 3: Join Be Well Gluten Free – We also publish blogs especially for the group by a range of dietitians on topics such as ‘Following the Australian Dietary Guidelines gluten free’, ‘The glycaemic index and why it’s important’, ‘5 easy tips for healthy GF meal planning’ and ‘Label reading tips to be well gluten free’. Here’s a link to a list of the blogs to help you Be Well Gluten Free. Our closed Facebook group is run by APDs for Australians who are gluten free for various reasons. The dietitians involved in the group have a special interest in coeliac disease and other food intolerances. We’ve set it up to help you live a happy and healthy life despite your diagnosis. We remind people that there’s no such thing as a silly question, and we’re living it and helping others who live with it every day.
So come and join in our support discussion, to help provide others with the support you’ve learned in your journey as well learning more for your own wellbeing. Being part of our support group can help you if you’re feeling down, as others will have experienced similar feelings too and can probably offer suggestions of how they’ve got through.
Life with coeliac disease holds every opportunity that it did before diagnosis. It just requires a little more specific knowledge about foods, and learning to be mindful of the food you’re choosing plus being organised so you don’t go hungry along the way.
Here’s to a fabulous and delicious life!
Sally is the owner of her private practice, Marchini Nutrition, has had type 1 diabetes for close to 40 years and coeliac disease for many years too. She is also Social Media Dietitian with Diabetes Counselling Online, and the dietitian on The Moon and You App.